Making Your Own End-of-Life Decisions: “All options of palliative care, pain management and continued life need to have been explained to the patient“

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Making Your Own End-of-Life Decisions: “All options of palliative care, pain management and continued life need to have been explained to the patient“

How does a physician handle a patient, who wants to die and what rights do I actually have as a patient? Legal practitioners do not automatically answer these and other questions. We talked about this subject with MD-PhD Ralf Jox from the Institute of Ethics, History and Theory of Medicine at the Ludwig Maximilians University of Munich, Germany.

Dr. Jox, let’s imagine I am a physician in a hospital. I struggle with caring for a critically ill patient, who asked me to help him die. What should I do?

Ralf Jox: It is important to talk with the patient, if that’s possible. This is initially the most important aspect for physicians. Then you discuss whether there are medical measures to prolong the patient’s life with the patient and possibly the family members. The patient needs to subsequently decide whether he or she wants to take advantage of this option and whether this is a therapeutic goal for him or not. I strongly advise to enter a dialogue.

People sometimes have a different perception of what makes life worth living or not. How do I act as a physician, if my patient refuses a treatment suggestion that I deem desirable?

Jox: Every person has the right to have a different opinion of course. This actually happens a lot, because by nature, physicians often have a different view of the situation, since they have an appreciation of specific treatments for instance. However, they need to be ready to engage with the patient and accept that therapies they deem worthwhile and useful are being rejected. There are limits when the patient no longer has the ability to judge or make decisions. Other conditions apply when you are therefore dealing with a patient, who is not able to make judgments due to a severe mental illness or delirium. As soon as a patient is competent however and able to review the consequences of the choice and reach a decision, he or she is allowed to decide against any type of treatment, even against life-sustaining measures.

But what should I do as a physician when the patient actively asks me to help him for instance by administering a painkiller overdose?

Jox: Euthanasia and physician-assisted suicide by directly ending a life are to be assessed differently by law. The request for euthanasia is illegal in Germany. However, assisted suicide is currently being strongly debated. Your question also touches on so-called indirect euthanasia. When a patient suffers from severe pain or severe shortage of breath at the end of his or her life for instance and already needs very high doses of pain medicine or sedatives, physicians can sometimes not rule out that the last phase of life is shortened by the high doses of drugs. This is permitted in Germany as long as the primary goal is pain relief and not the patient’s death.

You already mentioned that there are discussions on assisted suicide. What is the current state?

Jox: The current legal position on physician-assisted suicide is that it is not illegal in Germany. However, the legal admissibility for physicians depends on which German state they reside in. Approximately half of German Medical Associations prohibit physicians from it, while the other half allows it. Many patients rightly don’t understand this confusing situation. Added to this is the fact that there are also non-physician practitioners that offer suicide assistance, for instance within the realm of an association in Hamburg, by organizations in Switzerland or private individuals. These are all reasons why the German parliament (Bundestag) is now going to discuss a statutory rule over the next few months.

Jox: In collaboration with three other scientists from the palliative medicine, ethics and medical law sectors, I personally submitted a concrete legislative proposal. We suggest a middle ground between a complete ban on any type of assisted suicide and a liberal motion to leave everything the way it is now. We propose strict regulations with conditions to review physicians on an individual basis that they must meet. In particular, the conditions are to assess whether the patient is responsible and capable of making decisions. All options of palliative care, pain management and continued life need to have been explained to the patient. In addition, the patient needs to be given time to think things over as well as having everything reviewed by a second doctor. These are the major requirements that we suggest based on what has been regulated and stood the test of time in some U.S. states, particularly Oregon and Washington.

There are patients, who are no longer able to express their wishes. Would you therefore recommend for everyone to create an advanced directive?

Jox: Not every citizen needs to create an advanced directive. It makes sense for older people, who are chronically ill, or patients, who suffer from an incurable and fatal disease. This could be cancer or a neurodegenerative disorder for example. In these cases, advanced directives make sense, since it is foreseeable things will deteriorate and that there might be complications and emergencies. In the case of an advanced directive, it is essential to anticipate the types of problems that might occur, which is why it makes sense for this patient group. In the case of young, healthy people it potentially makes sense, if there is a high risk of sudden severe accidents, for instance if they engage in extreme sports. However, I would not ask every young person to create an advanced directive.

If you look at the history of medical ethics, is there a change in mindset that now involves patients and lets them decide what should happen at the end of their lives?

Jox: Yes, definitely. Until the 1960s, medical ethics was essentially a pure ethics guide for physicians. Then the patient took center stage and his/her autonomy was increasingly being considered. This development continues until this day. At this point, physicians take it very seriously to talk with their patients, educate them, get their consent or, if they are no longer able to provide it, to talk with family members as their representatives and final deciders. The affected persons should also be included in ethics committees to contribute their point of view.

Where does Germany stand on this subject in an international comparison?

Jox: Currently the U.S. and generally the Anglo-Saxon region are leaders in medical ethics. Germany presently still lags about 10 to 20 years behind in terms of professionalization. Within Europe, Germany is in a good position however. I believe we are still lacking a better connection between medical ethics and medicine itself in Germany. Medical ethics can presently often only be found in universities and here usually within the philosophical faculties; in other words far removed from the hospital facilities. I would soon like to see centers or departments for clinical ethics in clinical facilities and hospitals in Germany just like in the U.S.

Do physicians sometimes come to you and seek guidance?

Jox: Yes, there is definitely a big demand, which has already been shown in many studies. This is why we are currently building an ethical guidance center for the hospital facility in Munich. We are not just offering general guidance or continuing education, but consult on an individual basis, meaning with concrete treatment decisions. We visit the hospital and get together with the physicians and the nursing staff, but also with relatives and patients. In doing so, we are trying to assist in making a well-founded and responsible decision.